Improving Access To And Confidentiality Of Research Data

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Innovations in Federal Statistics

Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
ISBN 13 : 030945428X
Total Pages : 151 pages
Book Rating : 4.3/5 (94 download)

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Book Synopsis Innovations in Federal Statistics by : National Academies of Sciences, Engineering, and Medicine

Download or read book Innovations in Federal Statistics written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2017-04-21 with total page 151 pages. Available in PDF, EPUB and Kindle. Book excerpt: Federal government statistics provide critical information to the country and serve a key role in a democracy. For decades, sample surveys with instruments carefully designed for particular data needs have been one of the primary methods for collecting data for federal statistics. However, the costs of conducting such surveys have been increasing while response rates have been declining, and many surveys are not able to fulfill growing demands for more timely information and for more detailed information at state and local levels. Innovations in Federal Statistics examines the opportunities and risks of using government administrative and private sector data sources to foster a paradigm shift in federal statistical programs that would combine diverse data sources in a secure manner to enhance federal statistics. This first publication of a two-part series discusses the challenges faced by the federal statistical system and the foundational elements needed for a new paradigm.

Beyond the HIPAA Privacy Rule

Author : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309124999
Total Pages : 334 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Beyond the HIPAA Privacy Rule by : Institute of Medicine

Download or read book Beyond the HIPAA Privacy Rule written by Institute of Medicine and published by National Academies Press. This book was released on 2009-03-24 with total page 334 pages. Available in PDF, EPUB and Kindle. Book excerpt: In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.

Improving Access to and Confidentiality of Research Data

Author : National Research Council
Publisher : National Academies Press
ISBN 13 : 0309071801
Total Pages : 75 pages
Book Rating : 4.3/5 (9 download)

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Book Synopsis Improving Access to and Confidentiality of Research Data by : National Research Council

Download or read book Improving Access to and Confidentiality of Research Data written by National Research Council and published by National Academies Press. This book was released on 2000-09-11 with total page 75 pages. Available in PDF, EPUB and Kindle. Book excerpt: Improving Access to and Confidentiality of Research Data summarizes a workshop convened by the Committee on National Statistics (CNSTAT) to promote discussion about methods for advancing the often conflicting goals of exploiting the research potential of microdata and maintaining acceptable levels of confidentiality. This report outlines essential themes of the access versus confidentiality debate that emerged during the workshop. Among these themes are the tradeoffs and tensions between the needs of researchers and other data users on the one hand and confidentiality requirements on the other; the relative advantages and costs of data perturbation techniques (applied to facilitate public release) versus restricted access as tools for improving security; and the need to quantify disclosure risksâ€"both absolute and relativeâ€"created by researchers and research data, as well as by other data users and other types of data.

Improving Access to and Confidentiality of Research Data

Author : National Research Council
Publisher : National Academies Press
ISBN 13 : 0309171598
Total Pages : 74 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Improving Access to and Confidentiality of Research Data by : National Research Council

Download or read book Improving Access to and Confidentiality of Research Data written by National Research Council and published by National Academies Press. This book was released on 2000-08-11 with total page 74 pages. Available in PDF, EPUB and Kindle. Book excerpt: Improving Access to and Confidentiality of Research Data summarizes a workshop convened by the Committee on National Statistics (CNSTAT) to promote discussion about methods for advancing the often conflicting goals of exploiting the research potential of microdata and maintaining acceptable levels of confidentiality. This report outlines essential themes of the access versus confidentiality debate that emerged during the workshop. Among these themes are the tradeoffs and tensions between the needs of researchers and other data users on the one hand and confidentiality requirements on the other; the relative advantages and costs of data perturbation techniques (applied to facilitate public release) versus restricted access as tools for improving security; and the need to quantify disclosure risksâ€"both absolute and relativeâ€"created by researchers and research data, as well as by other data users and other types of data.

Registries for Evaluating Patient Outcomes

Author : Agency for Healthcare Research and Quality/AHRQ
Publisher : Government Printing Office
ISBN 13 : 1587634333
Total Pages : 385 pages
Book Rating : 4.5/5 (876 download)

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Book Synopsis Registries for Evaluating Patient Outcomes by : Agency for Healthcare Research and Quality/AHRQ

Download or read book Registries for Evaluating Patient Outcomes written by Agency for Healthcare Research and Quality/AHRQ and published by Government Printing Office. This book was released on 2014-04-01 with total page 385 pages. Available in PDF, EPUB and Kindle. Book excerpt: This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

Sharing Clinical Trial Data

Author : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309316324
Total Pages : 236 pages
Book Rating : 4.3/5 (93 download)

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Book Synopsis Sharing Clinical Trial Data by : Institute of Medicine

Download or read book Sharing Clinical Trial Data written by Institute of Medicine and published by National Academies Press. This book was released on 2015-04-20 with total page 236 pages. Available in PDF, EPUB and Kindle. Book excerpt: Data sharing can accelerate new discoveries by avoiding duplicative trials, stimulating new ideas for research, and enabling the maximal scientific knowledge and benefits to be gained from the efforts of clinical trial participants and investigators. At the same time, sharing clinical trial data presents risks, burdens, and challenges. These include the need to protect the privacy and honor the consent of clinical trial participants; safeguard the legitimate economic interests of sponsors; and guard against invalid secondary analyses, which could undermine trust in clinical trials or otherwise harm public health. Sharing Clinical Trial Data presents activities and strategies for the responsible sharing of clinical trial data. With the goal of increasing scientific knowledge to lead to better therapies for patients, this book identifies guiding principles and makes recommendations to maximize the benefits and minimize risks. This report offers guidance on the types of clinical trial data available at different points in the process, the points in the process at which each type of data should be shared, methods for sharing data, what groups should have access to data, and future knowledge and infrastructure needs. Responsible sharing of clinical trial data will allow other investigators to replicate published findings and carry out additional analyses, strengthen the evidence base for regulatory and clinical decisions, and increase the scientific knowledge gained from investments by the funders of clinical trials. The recommendations of Sharing Clinical Trial Data will be useful both now and well into the future as improved sharing of data leads to a stronger evidence base for treatment. This book will be of interest to stakeholders across the spectrum of research-from funders, to researchers, to journals, to physicians, and ultimately, to patients.

Protecting Data Privacy in Health Services Research

Author : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309071879
Total Pages : 208 pages
Book Rating : 4.3/5 (9 download)

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Book Synopsis Protecting Data Privacy in Health Services Research by : Institute of Medicine

Download or read book Protecting Data Privacy in Health Services Research written by Institute of Medicine and published by National Academies Press. This book was released on 2001-01-13 with total page 208 pages. Available in PDF, EPUB and Kindle. Book excerpt: The need for quality improvement and for cost saving are driving both individual choices and health system dynamics. The health services research that we need to support informed choices depends on access to data, but at the same time, individual privacy and patient-health care provider confidentiality must be protected.

Sharing Research Data to Improve Public Health in Africa

Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
ISBN 13 : 0309378125
Total Pages : 126 pages
Book Rating : 4.3/5 (93 download)

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Book Synopsis Sharing Research Data to Improve Public Health in Africa by : National Academies of Sciences, Engineering, and Medicine

Download or read book Sharing Research Data to Improve Public Health in Africa written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2015-09-18 with total page 126 pages. Available in PDF, EPUB and Kindle. Book excerpt: Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.

Data Matters

Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
ISBN 13 : 030948247X
Total Pages : 103 pages
Book Rating : 4.3/5 (94 download)

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Book Synopsis Data Matters by : National Academies of Sciences, Engineering, and Medicine

Download or read book Data Matters written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2019-01-28 with total page 103 pages. Available in PDF, EPUB and Kindle. Book excerpt: In an increasingly interconnected world, perhaps it should come as no surprise that international collaboration in science and technology research is growing at a remarkable rate. As science and technology capabilities grow around the world, U.S.-based organizations are finding that international collaborations and partnerships provide unique opportunities to enhance research and training. International research agreements can serve many purposes, but data are always involved in these collaborations. The kinds of data in play within international research agreements varies widely and may range from financial and consumer data, to Earth and space data, to population behavior and health data, to specific project-generated dataâ€"this is just a narrow set of examples of research data but illustrates the breadth of possibilities. The uses of these data are various and require accounting for the effects of data access, use, and sharing on many different parties. Cultural, legal, policy, and technical concerns are also important determinants of what can be done in the realms of maintaining privacy, confidentiality, and security, and ethics is a lens through which the issues of data, data sharing, and research agreements can be viewed as well. A workshop held on March 14-16, 2018, in Washington, DC explored the changing opportunities and risks of data management and use across disciplinary domains. The third workshop in a series, participants gathered to examine advisory principles for consideration when developing international research agreements, in the pursuit of highlighting promising practices for sustaining and enabling international research collaborations at the highest ethical level possible. The intent of the workshop was to explore, through an ethical lens, the changing opportunities and risks associated with data management and use across disciplinary domainsâ€"all within the context of international research agreements. This publication summarizes the presentations and discussions from the workshop.

Returning Individual Research Results to Participants

Author : National Academies of Sciences, Engineering, and Medicine
Publisher : National Academies Press
ISBN 13 : 0309475201
Total Pages : 399 pages
Book Rating : 4.3/5 (94 download)

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Book Synopsis Returning Individual Research Results to Participants by : National Academies of Sciences, Engineering, and Medicine

Download or read book Returning Individual Research Results to Participants written by National Academies of Sciences, Engineering, and Medicine and published by National Academies Press. This book was released on 2018-08-23 with total page 399 pages. Available in PDF, EPUB and Kindle. Book excerpt: When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research resultsâ€"such as results with unknown validityâ€"and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholdersâ€"investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participantsâ€"and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations.

Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age

Author : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309147824
Total Pages : 179 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age by : Institute of Medicine

Download or read book Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age written by Institute of Medicine and published by National Academies Press. This book was released on 2009-11-17 with total page 179 pages. Available in PDF, EPUB and Kindle. Book excerpt: As digital technologies are expanding the power and reach of research, they are also raising complex issues. These include complications in ensuring the validity of research data; standards that do not keep pace with the high rate of innovation; restrictions on data sharing that reduce the ability of researchers to verify results and build on previous research; and huge increases in the amount of data being generated, creating severe challenges in preserving that data for long-term use. Ensuring the Integrity, Accessibility, and Stewardship of Research Data in the Digital Age examines the consequences of the changes affecting research data with respect to three issues - integrity, accessibility, and stewardship-and finds a need for a new approach to the design and the management of research projects. The report recommends that all researchers receive appropriate training in the management of research data, and calls on researchers to make all research data, methods, and other information underlying results publicly accessible in a timely manner. The book also sees the stewardship of research data as a critical long-term task for the research enterprise and its stakeholders. Individual researchers, research institutions, research sponsors, professional societies, and journals involved in scientific, engineering, and medical research will find this book an essential guide to the principles affecting research data in the digital age.

Handbook on Using Administrative Data for Research and Evidence-based Policy

Author : Shawn Cole
Publisher : Abdul Latif Jameel Poverty Action Lab
ISBN 13 : 9781736021606
Total Pages : 618 pages
Book Rating : 4.0/5 (216 download)

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Book Synopsis Handbook on Using Administrative Data for Research and Evidence-based Policy by : Shawn Cole

Download or read book Handbook on Using Administrative Data for Research and Evidence-based Policy written by Shawn Cole and published by Abdul Latif Jameel Poverty Action Lab. This book was released on 2021 with total page 618 pages. Available in PDF, EPUB and Kindle. Book excerpt: This Handbook intends to inform Data Providers and researchers on how to provide privacy-protected access to, handle, and analyze administrative data, and to link them with existing resources, such as a database of data use agreements (DUA) and templates. Available publicly, the Handbook will provide guidance on data access requirements and procedures, data privacy, data security, property rights, regulations for public data use, data architecture, data use and storage, cost structure and recovery, ethics and privacy-protection, making data accessible for research, and dissemination for restricted access use. The knowledge base will serve as a resource for all researchers looking to work with administrative data and for Data Providers looking to make such data available.

Research Ethics for Students in the Social Sciences

Author : Jaap Bos
Publisher : Springer Nature
ISBN 13 : 3030484157
Total Pages : 294 pages
Book Rating : 4.0/5 (34 download)

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Book Synopsis Research Ethics for Students in the Social Sciences by : Jaap Bos

Download or read book Research Ethics for Students in the Social Sciences written by Jaap Bos and published by Springer Nature. This book was released on 2020-10-16 with total page 294 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access textbook offers a practical guide into research ethics for undergraduate students in the social sciences. A step-by-step approach of the most viable issues, in-depth discussions of case histories and a variety of didactical tools will aid the student to grasp the issues at hand and help him or her develop strategies to deal with them. This book addresses problems and questions that any bachelor student in the social sciences should be aware of, including plagiarism, data fabrication and other types of fraud, data augmentation, various forms of research bias, but also peer pressure, issues with confidentiality and questions regarding conflicts of interest. Cheating, ‘free riding’, and broader issues that relate to the place of the social sciences in society are also included. The book concludes with a step-by-step approach designed to coach a student through a research application process.

Privacy, Big Data, and the Public Good

Author : Julia Lane
Publisher : Cambridge University Press
ISBN 13 : 1316094456
Total Pages : 343 pages
Book Rating : 4.3/5 (16 download)

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Book Synopsis Privacy, Big Data, and the Public Good by : Julia Lane

Download or read book Privacy, Big Data, and the Public Good written by Julia Lane and published by Cambridge University Press. This book was released on 2014-06-09 with total page 343 pages. Available in PDF, EPUB and Kindle. Book excerpt: Massive amounts of data on human beings can now be analyzed. Pragmatic purposes abound, including selling goods and services, winning political campaigns, and identifying possible terrorists. Yet 'big data' can also be harnessed to serve the public good: scientists can use big data to do research that improves the lives of human beings, improves government services, and reduces taxpayer costs. In order to achieve this goal, researchers must have access to this data - raising important privacy questions. What are the ethical and legal requirements? What are the rules of engagement? What are the best ways to provide access while also protecting confidentiality? Are there reasonable mechanisms to compensate citizens for privacy loss? The goal of this book is to answer some of these questions. The book's authors paint an intellectual landscape that includes legal, economic, and statistical frameworks. The authors also identify new practical approaches that simultaneously maximize the utility of data access while minimizing information risk.

Responsible Research

Author : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309084881
Total Pages : 313 pages
Book Rating : 4.3/5 (9 download)

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Book Synopsis Responsible Research by : Institute of Medicine

Download or read book Responsible Research written by Institute of Medicine and published by National Academies Press. This book was released on 2003-02-06 with total page 313 pages. Available in PDF, EPUB and Kindle. Book excerpt: When 18-year-old Jesse Gelsinger died in a gene transfer study at the University of Pennsylvania, the national spotlight focused on the procedures used to ensure research participants' safety and their capacity to safeguard the well-being of those who volunteer for research studies. Responsible Research outlines a three-pronged approach to ensure the protection of every participant through the establishment of effective Human Research Participant Protection Programs (HRPPPs). The approach includes: Improved research review processes, Recognition and integration of research participants' contributions to the system, and Vigilant maintenance of HRPPP performance. Issues addressed in the book include the need for in-depth, complimentary reviews of science, ethics, and conflict of interest reviews; desired qualifications for investigators and reviewers; the process of informed consent; federal and institutional oversight; and the role of accreditation. Recommendations for areas of key interest include suggestions for legislative approaches, compensation for research-related injury, and the refocusing of the mission of institutional review boards. Responsible Research will be important to anyone interested in the issues that are relevant to the practice of using human subjects as research participants, but especially so to policy makers, research administrators, investigators, and research sponsorsâ€"but also including volunteers who may agree to serve as research participants.

Managing Statistical Confidentiality & Microdata Access

Author : Conference of European Statisticians
Publisher :
ISBN 13 :
Total Pages : 114 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Managing Statistical Confidentiality & Microdata Access by : Conference of European Statisticians

Download or read book Managing Statistical Confidentiality & Microdata Access written by Conference of European Statisticians and published by . This book was released on 2007 with total page 114 pages. Available in PDF, EPUB and Kindle. Book excerpt: These guidelines have been prepared a Task Force set up by the Conference of European Statisticians, with two main objectives.- The first is to foster greater uniformity of approach by countries to allow better access to microdata for the research community. The second is to produce guidelines and supporting case studies, which will help countries improve their arrangements for providing access to microdata.

Big Data and Social Science

Author : Ian Foster
Publisher : CRC Press
ISBN 13 : 1498751431
Total Pages : 493 pages
Book Rating : 4.4/5 (987 download)

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Book Synopsis Big Data and Social Science by : Ian Foster

Download or read book Big Data and Social Science written by Ian Foster and published by CRC Press. This book was released on 2016-08-10 with total page 493 pages. Available in PDF, EPUB and Kindle. Book excerpt: Both Traditional Students and Working Professionals Acquire the Skills to Analyze Social Problems. Big Data and Social Science: A Practical Guide to Methods and Tools shows how to apply data science to real-world problems in both research and the practice. The book provides practical guidance on combining methods and tools from computer science, statistics, and social science. This concrete approach is illustrated throughout using an important national problem, the quantitative study of innovation. The text draws on the expertise of prominent leaders in statistics, the social sciences, data science, and computer science to teach students how to use modern social science research principles as well as the best analytical and computational tools. It uses a real-world challenge to introduce how these tools are used to identify and capture appropriate data, apply data science models and tools to that data, and recognize and respond to data errors and limitations. For more information, including sample chapters and news, please visit the author's website.